An Open Forum for Disibility and Invisibe Illness Awareness

Posts tagged ‘Invisible Illness’

Respect their soul… by Tony Martin

My cat has a flea allergy. It only takes one bite and it sets him off. He scratches and looks tatty, and he also gets depressed. He will take himself off to a dark corner and sit. He hasn’t the sort of brain that can decide to do that. His brain is focused on food, hunting, sleeping and females.

A human being also doesn’t choose to get depressed. Our brains can make decisions, we can choose what music we like, what food we like and lots of different things, but we don’t choose depression.

Now my therapist would, I think, say we can choose to be happy. I’m undecided about that at the moment. What I do know is that depression is a reaction of the soul to outside circumstances. Some people have a chemical imbalance it seems, and medication works, however there has been no evidence ever to prove this is true. That doesn’t mean it isn’t. This is my article though and I’m writing about how I see things. So you might not agree and frankly I don’t care. I do care very much about people though and I think most people who get depressed tend to have that trait to their personality.

Having depression is frightening. Fear is a regular visitor. I can be afraid to be happy and I can be afraid to be unhappy. The in-between is safer and that is depression. Depression for me started very early. My Mother suffers with depression but in her day it was called “nerves”. Because of my Mother’s nerves I was sent away at about 2 years of age because I was “always crying”. Actually the fact was she couldn’t cope with a baby. I understand now how hard it must have been for her.

When someone is depressed things are hard. Demands on a person become huge. Expectations like lead weights. Cooking can seem impossible. A bath too much to contemplate. And that doesn’t mean all people who are depressed smell and don’t eat. I’m very particular about things like that. In fact depression can also make it hard to relax, break routine. Being very clean can be a reaction to depression as much as not being able to face a bath.

I am finding it hard to write about depression because it isn’t something separate from me. It’s a reaction of my soul. So it is entwined with who I am.
I am not always, in fact I’m never, sat in a corner unable to move. This is the great fallacy. People with depression are not weak. We are very strong. I am strong. I’m funny. I get pleasure from the smallest things. A ladybird can be fascinating and beautiful to me. I enjoy laughing.

I believe depression is a result of a lack of love, recognition, stimulus, fun. It’s when the little person looks at the grown up as their God and God is screwed up. If God, who is always right, all-wise, all-powerful, if he does something, like withhold love, then the little person believes they are bad. Because God (the parent) is good. This was my depressions birth.

We are all unique, depression is unique to each person. A doctor giving antidepressants out is akin to a mechanic handing you a spanner when you take your car in complaining somethings not right.
This is why I would advise anyone, who knows someone who is depressed, to listen. Forget every book you ever read. Every time you felt low. Treat a person who is depressed as you would anyone. Listen to them, give them your time. Treat them as an equal. They have depression, and they also have a soul.

Respect their soul.

Tony Martin ( @redfoxcountry )
Confucius: Have no friends not equal to yourself


The true face of Autism.. via @dontplaymepayme

Disability awareness by @HCAuctionsUK

I am a thirty four year old woman who has MS. I was diagnosed in January after being hospitalised because my symptoms were so bad I couldn’t cope any longer. I had to suspend my studies at university – in the hope that I would be able to return in September – and claim for Employment and Support Allowance. I also had to claim for Disability Living Allowance. 

Anyone who has ever claimed these benefits will know how hard it is.

For ESA I had to go through a 45 minute phone call to a call centre, at the end of which I was stressed, humiliated and exhausted. And that was only the beginning.

I was then told that I wasn’t entitled to it because I was still a student. I had a letter from the university which stated that I was no longer considered a student, that I wasn’t entitled to use their facilities and I was no longer exempt from Council tax. 

This wasn’t good enough. So in effect, for one government branch I was a student, for another I was not. How do they figure that one? And why are they allowed to get away with it?

I appealed against the decision. They upheld their original one. I appealed again. By this time it was April. 

Then I had another relapse. A bad one. So bad that I could barely get out of bed. I didn’t want to eat, I couldn’t bear noise or light, I couldn’t even talk on the phone. When I did get up I had to go back to bed a few hours later. If I made it past 7 pm that was a victory. My head felt like it was being constantly assaulted and I was in so much pain I spent all day in tears. I wondered every day how much more of it I could take.

And I couldn’t even cope with opening the post.

So I missed the medical assessment I was supposed to attend.

Two months later when I had recovered enough to open the post, I rang the Jobcentre and told them what had happened, and asked what I could do. The woman I spoke to was very unhelpful and said I should write a letter and tell them what was wrong with me so it could go on the file for the next time I claimed. And she had the audacity to assume I was suffering from stress or anxiety. 

By this time I had had to drop out of uni completely as I couldn’t tell them if I would be well enough to return in September. (As it turned out I wasn’t)

And I faced the whole battle of applying for benefit all over again.  

This time they were satisfied that I was no longer a student and processed my claim, dependent on passing the medical assessment. I don’t know if you’ve ever been to one of these but they are awful experiences. 

Even if you can barely walk and never leave the house you still have to go. I had to take my son with me to lean on as support.

The doctors don’t know much about MS and I couldn’t show them because it’s an invisible disease. There are no scars, plaster casts or broken bones to show them. 

So I was shaking with fear from the moment I got the appointment till the day the result came through. Why? Because someone who knows nothing about me or the disease was about to decide whether I was fit enough to return to work. I knew I wasn’t, my neurologist knew I wasn’t and so did my nurse, my GP, my physiotherapist and my occupational therapist. But their opinions mean nothing to the Jobcentre. After all, what do they know? They are only specially trained medical professionals.

I was lucky, I passed and was finally awarded ESA in May. It had only taken 5 months. I was placed in the ‘potential to work’ category which had me shaking with fear again. Was I going to be forced into jobhunting before I had recovered?

Again I was lucky, my advisor at the Jobcentre knows what the situation and assured me I wouldn’t be forced into anything before I was ready. 

I still can’t help worrying though.

As for DLA, what a minefield. The form is 48 pages long. It took months to fill in. Or rather, it took my friedn months to fill in since I couldn’t hold a pen. It’s invasive, humiliating, exhausting and emotionally draining. How would you like to specify every single thing that’s wrong with you, from your walking ability to your bodily functions? The only thing they don’t ask is what your shoe size is. 

I half expect that next time I have to claim. Because yes, despite the fact that my condition is progressive, the DLA, once finally awarded, lasts only for 2 years. Then I will have to do it all over again.

But at least it was all over.

Except it’s not over. I now live in fear of it all being taken away. Because our ‘coalition’ government – and I say that in quote marks because it’s less a coalition than a takeover of the Lib Dems by the Tories – have decided to cut the welfare bill by focusing on ESA.

There are too many cheats out there they say. 

Despite the figures which go against this, and despite all the evidence that these benefits are so hard to claim that there can be very few people who slip through the net, the Government are determined to punish me and others like me.

They announced a new medical test would be necessary to claim DLA. As if it weren’t already hard enough. The sheer stress of it is enough to put many genuine claimants off. I would have been one of them if I hadn’t had a friend who’d been through the process with her ex husband and was able to help me with it.

People with MS, along with those suffering mental illnesses, will be among those groups who suffer most. Simply because you can’t see what is wrong with us. And if you can’t see it, it isn’t there right?

I now live with the fear that I will end up with my benefits cut and nothing to live on because the Government is insistent on punishing those who are most vulnerable. And then what will I do? If I push myself too hard I make my condition worse. Can you say rock and hard place.

I want everyone to be aware of this, because disabled people are forever overlooked. Their issues are somehow never as important. And the Government continues to punish us. It isn’t fair, it isn’t right and it shouldn’t be allowed to happen. They have to make cuts yes, but not by penalising some of society’s most vulnerable people. 

I am on my way to recovery now, but it’s been a long road – all year – and it’s not over yet. But I constantly have to justify myself because to the man on the street I look perfectly well. I have no idea how to change that but I can try to make people aware online. One of my problems is numb hands. I cannot control my fingers as well as everyone else. As a consequence I make a lot of mistakes while typing. I was always good at English and I hate bad spelling and grammar, yet I now have to deal with it everyday. I spend a lot of time correcting the mistakes I’ve made because I hate making them. It’s dull and extremely frustrating.

So I decided that one way to make you all aware of just a fraction of what I deal with everyday, is to stop correcting them. Only for a day, I don’t think I could bear it any longer than that.

On Friday, October 15th, I will not be correcting myself on here and on Twitter. I hope that it will give you some idea of what it’s like to be me.

 And these sites are just a few that everyone should read. They are sad, angry, frustrating and eye opening. Which is why they need to be read.

I’m sorry, can you repeat that? by @splottdad

My name is Paul, I am 56 and I am deaf. I haven’t always been; I was born without any hearing in my left ear – which is, to all intents and purposes, a cosmetic attachment. It served no function other than allowing the opposition prop to get a grip when I played. The right one was working fine though, until one fateful day in January 2008.

I went to bed after a stressful and busy week, supervising an office move. I had a headache and a bit of a “buzz” in my head, but took some paracetamol and retired. I awoke next morning without the headache, and thinking how blissfully quiet Splott was on a weekday morning.

For the uninitiated, Splott (or the People’s Republic, as it is known in Labour Movement circles in South Wales) is inner city Cardiff. Shirley Bassey was born here. Forget that bollocks about Tiger Bay – she was born in Splott. It just sounded better probably!
Anyway, I awoke and quickly realised that I couldn’t hear at all. I resisted the temptation to crap myself, though it was awfully tempting, got dressed and came downstairs. What to do? I live alone. My daughters’ are grown up and their mother and I, whilst still very good friends, are separated. She lives the other side of Cardiff.

I know, I thought, I’ll ‘phone . . .  no wait, can’t do that! I ended up walking to the GP with a pencil and pad, and spent a fun few minutes “communicating” that way. To cut a long story short, I eventually was diagnosed as having a viral infection, which was by now untreatable and the damage done irreversible.

There you have it. After numerous tests, visits to audiology, a session of having a mould taken of my right ear for an earpiece, and assorted consultants, I now have a hearing aid. Problem solved . . .

Only it isn’t, because I still can’t hear. I hear noise, not detail. I can hear you speak; I just don’t usually understand what you are saying. I have to work at it. I really REALLY have to concentrate, and I find that physically tiring. Worse, I have to explain and pretend to be amused at the jokes; tolerate the bored looks when I ask for repetition; and all this whilst suffering from severe tinnitus as well. I didn’t mention that, did I? Sorry – I do that a lot too; apologise. I have to apologise for being disabled.

Society seems to like “absolutes”. They would like me to be completely deaf apparently. Unable to hear anything at all. Anything less and I am not trying hard enough. But few disabled people satisfy that criteria. Most visually impaired can see something, albeit relatively useless for the main purpose of sight. Many of the mobility impaired can move, but not well enough to walk.

Similarly, I get people tell me of their “League Status” of disability, if they had a choice!! “Oh, you’re deaf? Still, not as bad as being [delete applicable] blind/ crippled/ mentally ill/ a Tory, etc.” – no, I made that last one up. Thank God I am not a Tory. I really would have to end it all then. My response; come here – I have two knitting needles and I’ll accommodate you “pal”.

I am luckier than most, I know that. I endure no pain as a result of my disability (well, not physical!) and I know of many people who do, including someone who is becoming increasingly special to me. Whilst the comments and the attitudes can be hurtful, I am better able to deal with them than many.

I am 6 ft tall and 17 stone, confident, loud and after 40 years in the world of work – much of which has been involved with Trades Unions – I can handle an argument! Rumour has it, I even start a few!

My employers, in the main, have been good. My family have been brilliant, as have many work colleagues and friends. However, I have also had a large degree of insensitivity, some abuse and a complete lack of support from a major Trade Union that I was formerly very active in for many years. I hasten to add, not my current one.

My life has changed. I grew up in 1970’s/80’s and loved the music of the time. I was at live gigs most weeks, often 2 or 3 a week. I did the Festivals and accumulated an impressive vinyl/ cassette/ cd collection. It’s all gathering dust now. I haven’t had the heart to sell it, which I should do, because it feels like I would be selling my youth? Yes, I know – sentimental claptrap.

I have had to change my job. I have had to change my ways too. I have to be a lot more patient, less aggressive and more focused, and that is hard for me. I grew up in the hearing world. BSL (sign language) is no use to me. All my friends are hearing. Lip reading is limited too. At 56, my eyesight isn’t that wonderful either, and some of you still insist on looking away or putting your hands in front of your face, or something.

Anyway, this could be the first instalment or the last. It depends on feedback. I have some personal insight into disability in society, into induction loops and a whole host of things, I may be deaf, but I am still a gobby bastard with opinions. Thank you for listening, and please be grateful that you can…